{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"submitter":["Raghu VK"],"funding":["NIDDK NIH HHS"],"pagination":["446-450"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC8034834"],"repository":["biostudies-literature"],"omics_type":["Unknown"],"volume":["72(3)"],"pubmed_abstract":["<h4>Background</h4>Caregivers of children with intestinal failure (IF) face difficult decisions without a clear best alternative. Providers assist in decision-making but often lack knowledge of caregiver perspectives. Using decision-making around anemia treatment as a focal point, we explored how caregivers of children with IF prefer to make decisions. Our goal was to offer insight to guide providers as they assist in decision-making.<h4>Methods</h4>We conducted 12 half-hour semistructured interviews with parents of children with IF. Interview questions addressed general decision-making and specifics of iron supplementation, including key factors and stakeholders in decision-making. Interviews were transcribed verbatim. Two investigators coded the transcripts and inductively derived themes.<h4>Results</h4>Four themes were identified regarding decision-making. They involved the search for reliable, accurate, and positive information; the role of caretakers on the medical team; the relationships between caretakers and the medical team; and effective communication. Themes around anemia treatment included: identification of anemia by bloodwork; proactive supplementation; individualized regimens; prioritizing safety and convenience.<h4>Conclusions</h4>Understanding caregiver perspectives regarding anemia treatment in pediatric IF identifies opportunities for systematic quality improvement."],"journal":["Journal of pediatric gastroenterology and nutrition"],"pubmed_title":["Caregiver Decision-making in Pediatric Intestinal Failure: A Qualitative Study Focused on Iron Deficiency Anemia."],"pmcid":["PMC8034834"],"funding_grant_id":["T32 DK063922"],"pubmed_authors":["Prathapan KM","Hamm ME","Norman MK","Rudolph JA","Raghu VK"],"additional_accession":[]},"is_claimable":false,"name":"Caregiver Decision-making in Pediatric Intestinal Failure: A Qualitative Study Focused on Iron Deficiency Anemia.","description":"<h4>Background</h4>Caregivers of children with intestinal failure (IF) face difficult decisions without a clear best alternative. Providers assist in decision-making but often lack knowledge of caregiver perspectives. Using decision-making around anemia treatment as a focal point, we explored how caregivers of children with IF prefer to make decisions. Our goal was to offer insight to guide providers as they assist in decision-making.<h4>Methods</h4>We conducted 12 half-hour semistructured interviews with parents of children with IF. Interview questions addressed general decision-making and specifics of iron supplementation, including key factors and stakeholders in decision-making. Interviews were transcribed verbatim. Two investigators coded the transcripts and inductively derived themes.<h4>Results</h4>Four themes were identified regarding decision-making. They involved the search for reliable, accurate, and positive information; the role of caretakers on the medical team; the relationships between caretakers and the medical team; and effective communication. Themes around anemia treatment included: identification of anemia by bloodwork; proactive supplementation; individualized regimens; prioritizing safety and convenience.<h4>Conclusions</h4>Understanding caregiver perspectives regarding anemia treatment in pediatric IF identifies opportunities for systematic quality improvement.","dates":{"release":"2021-01-01T00:00:00Z","publication":"2021 Mar","modification":"2025-04-04T10:16:15.368Z","creation":"2025-04-04T10:16:15.368Z"},"accession":"S-EPMC8034834","cross_references":{"pubmed":["33560760"],"doi":["10.1097/MPG.0000000000002979","10.1097/mpg.0000000000002979"]}}